A list of publically available AD databases presented below:
Ongoing, longitudinal, multicenter study designed to develop clinical, imaging, genetic, and biochemical biomarkers for the early detection and tracking of AD. The primary goal of ADNI has been to test whether serial magnetic resonance imaging (MRI), positron emission tomography (PET), biological markers, and clinical and neuropsychological assessment can be combined to assess the progression of MCI and early AD. Genome Wide Association Study (GWAS) data are also available and whole genome sequencing data of 800 ADNI subjects will be available in the summer of 2013.
Applications for ADNI data are reviewed by the ADNI Data Sharing and Publications Committee (DPC), usually within one week. Each application is reviewed to ensure investigator affiliation with a scientific or educational institution and to assess the proposed research.ADNI is funded by the NIA and other NIH Institutes and by the pharmaceutical and other industries and several foundations through the Foundation for the NIH (fNIH). ADNI is administered by NIH through a cooperative agreement grant to UCSF. FNIH coordinates the private partners, receives donations and convenes the Private Partner Scientific Board. The ADNI database is administered by the ADNI Informatics Core, based at the Laboratory of Neuro Imaging (LONI) at UCLA.
Established by the National Institute on Aging/NIH to facilitate collaborative research by collecting data from 29 NIA-funded Alzheimer’s Disease Centers. NACC includes approximately 25,000 subjects, roughly equal parts cognitively normal, MCI and demented. These subjects have been examined annually for up to 6 years following the standardized Uniform Data Set. Of these subjects, approximately 2,200 have had autopsy data with detailed neuropathological features included in the database. NACC data includes more than 700 variables, representing demographics, behavioral status, cognitive testing, medical history, family history, clinical impressions, and diagnoses.
Requests are vetted by answering online a few brief questions describing the project. A NACC liaison will respond within one business day to acknowledge the request and, if needed, ask for clarifications. NACC offers a telephone consultation (206-543-8637). Statistical consultations on analysis plans are also available upon request.
Database for Alzheimer’s disease created by the Coalition Against Major Diseases (CAMD). Contains de-identified longitudinal clinical data on 6,500 patients from the control arms of 24 clinical studies of AD including three studies on MCI. CAMD worked in conjunction with the Clinical Data Interchange Standards Consortium (CDISC) to develop Alzheimer’s-specific data standards following the CDISC Study Data Tabulation Model (SDTM). An understanding of the CDISC SDTM standard is essential to navigating this database. This project is funded in part by the FDA and Science Foundation Arizona. More information on this open-source standard data format can be found at www.cdisc.org.